New Member Intro & Question

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B " H

Hello All,

I was stunned to find this list, as I believe my

daughter may've been damaged by Miralax/Glycolax.

Miri is now almost 14 and has Septo-Optic

Dysplasia with blindness and

panhypopituitarism. She is also severely

autistic, but pretty high functioning thanks to

many alternative treatments, including the gluten

free, casein free diet which we put her on in

November 2000. Her story is as follows:

Mirjana has a long history of problem BMs; they

have been dramatically different at different

times in her life. Reglan (.4 cc qid) was

prescribed for her severe reflux, beginning at 2

weeks of age. By 3 mos. of age, her Reglan dose

was .8 cc and formula was weighted with rice

cereal per her MD. At 6 months, her first solid

food was oatmeal, since she’d been on rice for

weighting, and her Reglan was increased to 1.25

cc qid. Reglan was discontinued about 18 months

of age. Beginning about age one year, Miri began

to be terribly constipated and had to have a

fully bottle of prune juice daily in order to

make. (Karo syrup didn’t even begin to have an

effect.) Sometime in toddlerhood, her BMs became

very mushy and obnoxiously smelly. They contained

all kinds of obviously undigested foods and

fibers. She would often make just a Tbsp. at a

time and often would make many BMs over the

course of several hours. This apparent GI

involvement was more and more troubling the

longer she was not able to be toilet

trained. Although this was repeatedly brought to

the attention of her pediatrician, it was called

“toddler diarrhea” and nothing specific was suggested.

Miri also began to have urinary tract infections,

beginning in May ’99. The first of these,

undetected, precipitated a major adrenal crisis

(due to her panhypopituitarism) for which she was

hospitalized for a week at CMH. As time went on,

these UTIs became more and more frequent. (A

urine flow study, VCUG, completed about this time

was normal.) Finally after about 18 months of

this, we put her on cranberry extract. (Until

recently, she had only one UTI on the

cranberry.) During the first 18 month period of

frequent UTIs, endocrine crises, and ER visits,

Miri had one incident of low sodium

(hyponitremia) which required several days’

hospitalization. We don’t know what precipitated

this problem. Miri was not toilet trained at all

until going on the GF/CF diet in the fall of 2000

(age 8) at which time she became bladder

competent in the daytime. (Her lack of training

was never a problem of being unable to hold

urine; she had difficulty releasing urine into

the toilet.) Miri was not able to produce a BM

in the toilet at this time, apparently due to

anxiety. She did produce a BM daily however, but

this would occur in her pull-up after she was put

to sleep. We felt this was contributing to the

frequent UTIs when we were not immediately changing her.

In the fall 2002, Miri ceased having nightly BMs,

but this wasn’t discovered for a few days. (My

husband and I each thought the other had changed

her.) We gave her a suppository, which produced

what must’ve been 5# of feces, very hugely

formed. Miri complained that it hurt her, and

went another couple of days without a BM. We

began a nightly suppository regimen, using the

drug-containing type, as the other did not

stimulate a BM. Over about the course of 6 weeks

we were able to wean her off the medicine and had

trained her to make a BM in the toilet nightly.

In April 2005, Mirjana was hospitalized (her

third time) at Riley for an acute adrenal

crisis. The only demonstrable precipitant was

constipation. We, her parents, suspected she’d

passed a kidney stone(s), but there was no such

evidence on the CT scan. Following a consult

with the Gastro team, Miri was placed on

Glyco-Lax, 2-17 gram doses daily, which I reduced

to I dose soon thereafter, as she began staining

her panties. We discontinued using Glyco-Lax in

late December 2005, due to concerns about her

extreme bloating and flatulence, which seemed to

have commenced sometime the preceding summer. (I

shared my concerns with the dietitian at CMH who

suggested Benefiber as a replacement for the

Glyco-Lax, starting gradually, and working up to

5T. daily, which Miri is currently taking.) We

also radically reduced the amount of soy products

in her diet. It was because of the extreme

bloating and flatulence that we started seeing a

GI doctor, Strople at CMH in Chicago,

who ordered abdominal x-rays, blood work, stool

samples, and dietary analysis in December

2005. These results were not remarkable except

for markers for microcytic anemia, and gas

distension of the entire intestinal tract. Dr.

Strople’s diagnostic impression was air

swallowing. We (Miri’s parents) insisted this

was not the problem, and Dr. Strople agreed to

order a hydrogen breath test. The first test was

deemed inconclusive, so a second was

ordered. The second was negative, but a third

test was done using lactulose instead of glucose,

because the glucose test can have false

negatives. This test was also negative, so a

gastric emptying scan was ordered. This test

diagnosed delayed gastric emptying

(gastroparesis.) A trial of Erythromycin was

ordered, 200 mg. 3x daily. Initially, this

seemed to decrease her bloating, but within 2

weeks, the effect ceased. A fresh prescription

was obtained, but with no positive effect. At

this point, Dr. Strople suggested a trial of

Flagyl, but we were resistive to this idea, due

to the high incidence of nausea. (Miri would not

be able to control where she became sick…) Dr.

Strople also suggested increasing the

Erythomycin to four times daily, but we chose

first a trial of choline citrate as suggested by

Dr. Myrna Trowbridge, Miri’s nautural treatment

oriented G.P. We started off with 1300 mg.

daily, and saw no effect. This was increased to

1300 mg. twice daily, but we are still seeing no effect.

We recently took Miri to Dr. ph Croffie, a GI

motility specialist at Riley CH in

Indianapolis. He was somewhat agast that a

barrium small bowel x-ray series had never been

done, so he ordered that as well as repeated

blood work, all of which showed nothing

remarkable, except that the radiologist noted she

became increasingly more distended over the course of the SB study.

So, here's my kid who blows up as much as 5.25 "

in waist measurement over the course of the day,

meaning one set of clothes for morning and

another for afternoon. While we knew she had GI

issues, we were working on these via diet and her

stool samples were showing strong evidence of

improvement. Then, she goes on this Glyco-Lax

and sometime after that starts up with chronic ab

distension and gas...and horribly so. She says

her belly always hurts and it seems to be getting

worse and worse. Also, we are Torah observant

Jews...she used to not blow up on fast days, but

now never seems to lose the bloat completely, even after fasting.

Anybody else ever have similar symptoms after

feeding their child anti-freeze????

Thanks,

Debra